Currently on 40 mg of Prednisone and New to UC

Hi Joe Hay here. Born & raised in NJ but currently live in VA. December 2013 I’ll be 67 and I’m truly blessed to have attained that age, since my father and both grandfathers never lived that long.
I retired in 2011 from a very physically demanding job, that both kept me strong and wore my body parts out at the same time. The past two years of leisure have helped my body heal and now I stay fit with exercise on my terms.

Some more about me:

My hometown was Bayonne, NJ, but now I live in a costal town in South East VA. Living near the ocean, bays, and rivers here fits in well with retirement … I like to fish.

Retirement has given me the time to work on all the half finished projects I couldn’t attended to while working full time and raising a family. My major interest is genealogy, and since 1991 I’ve been gathering all the family history I could find to build my family tree. After several years working on my family I gained enough knowledge to help others with researching their families, in a professional capacity. I also freelanced as a researcher for a company based in Canada, researching for families with missing heirs.

As a speech and drama major in college and a singer, I worked many years in musical theater. I still use these talents on occasion, in church holiday productions.

Symptoms:

Currently (Oct 2013) I am on 40 mg of Prednisone and as I see many of you have also used this, you know the step down dosage drill … I’ve got about 6 more weeks to go. My UC symptoms right now are mild. There’s almost no bleeding, I have small formed stools, and only about three BM a day (Hallelujah!).

My Story:

I’ve been reading some of the stories on this website and see so many people getting UC at a young age. I consider it a blessing that I lived over 66 years before it struck me. I have the feeling it was triggered by having a colectomy for diverticulitis. A small section of the colon was removed and the rest was reconnected. After a follow up colonoscopy, where all looked good, I began to have a few irregular BM’s. The GI doc dismissed my concern as nothing to worry about, even when I started seeing blood with the scant stools. In 2012 I changed gastroenterologists and was given another colonoscopy which discovered the UC.

I had just started a part time job in Oct of 2012 and had to quit in Nov as my first flare up increased in intensity. The first month of medication didn’t help a lot, so the second month, steroids were added. That worked and I was back to normal and stayed that way for over 4 months. Now, I didn’t know that this disease was chronic and likely to return anytime.

Come back it did, with a vengeance! I had nothing but bloody diarrhea for months. The worst part was the severe straining urges while passing nothing … kind of like the dry heaves only on the other end of our food tube. This condition caused me to develop a hemorrhoid.
I restarted the Balsalizide capslues & Mesalamine enemas last month and I’m now on Prednisone, and things have gotten much better. I’m now looking at what I can do with a change in diet to control the symptoms rather than killing my old internal organs with all the chemicals.
My wife has been very supportive during the time I was hitting the john 20 times a day, a bit of a challenge having only on bathroom. Keeping enough TP in the house was also a little challenging.

I just saw a Mayo Clinic study that said people with UC also have a higher risk of stroke and heart failure. I already had 4 angioplasties, 2 stents implanted, and 2 bypass surgeries with a total of 8 bypasses, and a minor heart attack in 2011, all before I got UC!

One question, does anyone have a problem not feeling the urge to urinate while they are in a flare state?

I’ve added all those suffering with the various types of Inflammatory Bowel Diseases to my prayer list. God bless us all.

Joe

Medications:

When first diagnosed was put on Balsalizde because my medicare advantage plan with Humana would not pay for any name brands like Asacol or the copay was out of my range. Balzalizide converts to mesalamine in your system. Taking 3 huge capsules three times a day and with that a mesalamine enema every night. My symptoms got only slightly better so the steroid was started, which helps me after only a few doses.
I do believe probiotics have helped me and I’m using Ultimate Flora.

written by Joe H

submitted in the colitis venting area

About Joe H

Hi Joe Hay here. Born & raised in NJ but currently live in VA. December 2013 I'll be 67 and I'm truly blessed to have attained that age, since my father and both grandfathers never lived that long.
I retired in 2011 from a very physically demanding job, that both kept me strong and wore my body parts out at the same time. The past two years of leisure have helped my body heal and now I stay fit with exercise on my terms.

19 Responses to Currently on 40 mg of Prednisone and New to UC

Thanks for sharing your deal with UC and so much about who you are. Your lifestyle sounds pretty amazing, and congrats for spending time on your interests and hobbies. I’ve got a cousin who I think has stopped talking to everyone in the family for a few years now since she’s so wrapped up in mapping out every last detail in the family tree (some creepy stuff in there too, but super interesting:)) and she coudn’t be happier.

Anyways, you brought up a pretty interesting question about urinating which isn’t talked about here much. But, from my experience several years ago right after my diagnosis (when symptoms were severe) I think I forgot hot to urinate. Seriously…semed like days and days would go by without me ever taking a pee. Maybe a little of that happened of course when I was dropping a slime load and all, but never an actual pee only type of deal.
So, yes, I for sure remember that, and i chalk it up to very little absorbtion in the colon of fluid, and most of it just running out the final end.
Best to you and your family, and good luck to the fish in the Atlantic in avoiding your fishing hooks,

Thanks for the reply and thank you for your time & efforts on this site. You’ve got a real mission here, to provide support and encouragement to us all. Bravo!

I believe you are right on the urine question. It makes sense that if more fluid is leaving via the bowls less would be going to the bladder. Now that the flare has subsided urination is back to normal. I also had an episode of low blood pressure where I thought I was having a heart attack. I suddenly broke out in a cold sweat, and nearly passed out. I spent 8 hours in the ER. I was not drinking enough fluids and some of my heart meds lower the heart rate and dilate my blood vessels. I believe this caused my bp to crash. Scary! I must remember to drink water.
Joe

Joe, that does sound scary, but sounds like you now know what might have tripped you up.
I hope you and everyone else continue to make use of the site, and I hope it can be of use to many others who are struggling with symptoms for years to come.

take care and glad that wasn’t a heart attack, better to have a heart attack when you got a monster red drum or flounder on the line eh,

Glad to hear you’re doing better and have a supportive wife. I feel you with the one bathroom situation!!

To answer your question, no! I have never experienced problems with urges to urinate whilst in flare or not. In fact as I am beginning a flare, I notice a constant urge to wee wee :-)

I think this may be caused by inflammation in bowels pushing on my bladder. If you’re not getting the urge to urinate I would bring this up with your doctor.

Certainly look at diet, it will help. Cutting out added sugars and wheat/gluten/grains helps me. I also have issues with dairy. If you try the SCD or GAPS etc, just remember there may be elements of the diet that works for you and some aspects that do not. Probiotics seem to help many UCers and finding a good one that works for you is a good step.

Thanks for your comment. It’s amazing how many different things people with UC have to deal with, just when you got one thing worked out something new pops up.

I am NOT looking at this diet stuff with a happy face :( My diet is and always has been, CARBS. If I don’t have starches and sugars, i haven’t eaten. Period.
Add to that lots of fried foods and fatty and/or processed meats.
Some how I avoided becoming overweight like my siblings, except I did blowup during my first year of marriage. My wife & I spent a LOT of time eating in bed, and we really got pregnant together.

While I’m on this prednisone, I’m eating everything and having normal BM.
The Dr. is urging me to continue taking other meds, now and for the rest of my life.
I really don’t want to do that, so i’m praying for a miracle, so I can still eat an Italian sausage sandwich on a sub roll, with peppers & onion, smothered in sauce and topped with cheese and not get a flare up. Hey, it could happen! :)

I like pred. Knocked out my first flare last year. Now taking it for my second flare. Works right away and so far I don’t see any BAD side affects. It does give me the hungries, but I’m not gaining weight like some have said they do.
Joe

Wow!! Have to say you look great for 67! I’m a newcomer to the site as well and reading stories from other UC’ers is quite an eye-opener. You’ve been through a lot!
I’m still questioning the diet thing myself. I used to be a FAT person. Not originally. As a kid I was skinny enough to get teased. Stick insect, Peg legs etc… I grew to have a relationship with food where I would stack up the milk and chocolate chip cookies and take a sip of milk, a bite of a cookie, a sip of milk, a bite of a cookie…. loved it, and nobody could say I starved myself!

Eventually though, after the sports stopped and working life began, I grew.. in my late late 30’s I tipped the scales at nearly 100KG and decided enough was enough. This was BEFORE the UC. I loved carbs too!! But I took control. Started a medically approved ‘lifestyle choice’ (I hate the word DIET) of 2 x meal replacement shakes a day (LOW GI) and doctor approved, with healthy snacks in between and a very healthy protein/vege or salad main meal in conjunction with good supplements, exercise and lots of water intake. Guess what?? I lost 35KGs!! Then….. within a year I got UC. I had never been so healthy so I couldn’t explain it!! Makes you wonder eh? So I’m not sure about the diet. I still have a shake for breakfast and lunch, it’s how I roll!! As I said, I didn’t consider it a ‘diet’ as I made a choice to change for my health, not just to lose weight. It doesn’t make sense!!
I don’t really eat processed foods. ( I enjoy a low carb beer) and I love to eat steak and lamb and chicken and fish as well as catching the fish!! , but I can’t work out why my body would have a freak out of such major proportions after getting rid of the crappy sugary food and carbs!! I’m not 67, but I was diagnosed at 39, which is quite late I guess considering. Hey, I’m with you on the meds scenario. I’ve actually been only on Sulfasalazine since diagnosis and I’ve made it this far!! I can still eat a steak and have a beer!! I consider myself blessed when I see other stories. Wishing you all the best too Joe, it’s a crazy disease, with no discrimination on who gets it, so it seems. KIA KAHA. (Stay strong). :)

Anyway, nothing like the support of a good wife (or hubby in my case). It can be take it’s toll on them as well, but a little love goes a long way!!

Hi Anne, Thanks for your reply. I guess we’re in this thing for life, so it’s so good to have all this support and info.
I’m just happy the prednisone treatment I’m on now will carry me through all the coming holiday meals :)
Hopefully I’ll have a good diet plan put together for 2014 and for the rest of my years so I can stay off the drugs all together.
All the best to you, Joe

Welcome to a great site and community, Joe. You’ll find a lot of support and useful advice from UCers in the trenches doing all they can to get better–and we run the spectrum in our chosen therapies, which is great because you’ll read about a lot of options. Yes to the pee question! In my first flare this was definitely the case. I was pregnant at the time and I remember thinking that I was hardly urinating at all when all you hear is about how often pregnant women pee! Not me. I agree with Adam’s theory as well on the reasoning.
As for diet, it has had a major role in my healing, as have supplements. But it took me a while to commit wholeheartedly. We all have our own journey with UC–learn as much as you can and make informed choices from there. I wish you all the best in your healing!

Thanks Col, So glad I found this site. I have learned much more here than from the so called professionals.
Now I’m making sure I get enough water to prevent dehydration.
Thanks for your welcome message, Joe

Continue on that probiotic…I am not on any meds at all any more, because meds do not work for UC. It took me 15 long painful years on the meds to realize this.

I, too, take one Ultimate Flora Critical Care probiotic capsule, every morning upon waking, on a completely empty stomach and then no eating or drinking anything other than water for at least half an hour afterwards. I take L- glutamine (to keep the mucosa of the colon ulcer free as it heals it) about 11am, an hour before lunch, also on an empty stomach.

These two things have kept me in remission for two years, the first time I’ve had real remission in the whole time I’ve had UC! T he meds either stopped working, or never worked at all.

I can’t help on the steroid front, but I do know that taking them makes us 100% steroid dependent, meaning that when you discontinue them, the UC symptoms creep back in again…

Hi Bev, I’m counting the days as I ween myself off the prednisone and am trying to be positive but also being anxious about the possibility of another flare after I’m off of it.
I will take your advice on the L-glutamine and see if it helps prevent a flare. I was good for about four months after my first flare, on no meds or special diet. I was ignorant about the disease and didn’t know what was in store, no thanks to the gastro doctors who were treating me.
thanks for your comments.
Joe

Joe, I would definitely pay attention when you don’t pee or if your pee is getting darker. Both are signs of dehydration which is very common during a flare. As you know, your colon is not absorbing fluid as it should when it is inflamed. You can’t depend on your intake of fluids to decide if your dehydrated. When I am in a flare, I keep water by my side all day and drink non-stop and yet I have ended up in the ER on more than one occasion due to dehydration. For me, I have other clues like dizziness, exhaustion, and not thinking clearly as well but keeping up with how much I am peeing is also key.

Thanks for your input. I did notice the dark urine even before the flare was in full swing. I mentioned this to two doctors, one had no answer and the other ordered some urine tests which came back normal. I wonder why doctors seem so uninformed about UC symptoms and the many effects on our other body systems.
Watching my water intake now.
Thanks again, Joe

Hello All, Here is another side effect of UC I didn’t see coming … the effect on my water and sewer bill !! :(
Usage before the flare up was1,967 gal for two months , which cost me $75.26. During the flare I flushed 15,416 gallons down the tubes, at a cost of $177.94 for just 57 days! My waste water treatment bill, went from $16.25 to $71.00 for the same period. Holy crapper Batman! Just glad I’m only going twice a day now. I may start using other ways to dispose of this waste. Kitty litter? :)

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I am a Mom of a teeneager diagnosed wit UC and when I was searching for common ground,comfort and the real story this was it! I haven't finished the book but I have already taken away suggestions for my son's care and utilized them. So that was worth already the cost of the book and recipes. Thank you Adam and I will review again, I am sure positive, when I have time to finish reading and applying!

I found Adam’s book to be very information on about having UC. I am a mom of a UCer but I also have digestive issues. It can be overwhelming at times and Adams book brought me hope. I highly recommend it as a book to help you find your way through it.

Thank you for sharing your story and journey to remission Adam. I am integrating some of your ideas and asking more questions of my health care practitioners to get on my own path to remission faster. Also, the immediate changes I made in my diet has been encouraging to alleviate some symptoms.

Thank you again. I look forward to the next iteration of your cook book.

What an amazing resource. It definitely opened my eyes to the world of UC. I love how realistic Adam was about all the different treatments, and the details of the struggles to get to remission. While it definitely wasn’t what I wanted to hear (I think we can all agree it would be nice if we could just wake up and feel better), it was definitely comforting to know I’m not the only one struggling hardcore to get to remission so that I can hopefully control my pancolitis with lifestyle and not medications eventually. The book had me laughing at times and in tears from being able to relate to the struggles. Thank you so much for writing this book. It’s been such a valuable resource in so many ways, including helping me learn ways to share information so my family and friends can have a better understanding of what it’s like. So again, thank you for this Adam. It is a must read for anyone struggling to gather as much information as possible.

I honestly felt like you wrote my biography. I've lived my life the same way you did, eating, drinking and partying without having to worry. I did have signs along the way as well but didn't take to much notice to it until the blood showed up. I was diagnosed in October 2016 and at the time my GI told me it had nothing to do with my diet, so I lived my life the same way I always did. I've been trying many different meds without little or no results. After my 29th birthday in June 2017 I started feeling more sick and the weight loss had started, I've always been a skinny guy and ever since I lost quiet a bit of weight which has been something that just makes me feel more uncomfortable. I consulted a Homeopath in October 2017 and she started me on the Paleo diet, while researching that I came across your site and the SCD diet which I started in December 2017. I didn't do any of the diets a 100%, but I did start seeing results. I went a bit off the rails during the festive season while traveling but I'm easing into the SCD diet again and plan on going 100% this weekend. UC has caused a lot of stress for me but I've come to accept it and look at it in a positive way. My goal is to eat healthy, put some weight back on and start living a normal life again. I haven't let UC stop me from living my life although it has limited me, but thats all going to change! Thank you for sharing your story and being an inspiration to all of us.